My Senior Citizen Pelvis + Updates Galore

Twin Peaks in the distance (radio tower is on right peak)
from Bernal Hill. TP is the 2nd highest point
and the geographical center of the city. Random factoids.
Photo Paris Cullen

On Wednesday I had a CT scan; on Thursday, a meeting with Dr. Tavakoli, who is my main oncologist now, to discuss it; and Friday, a complete bone scan. Some of it might not make perfect sense but it's what I can manage at the moment. It's a lot of information, gleaned from scrawled notes...


Notes on Dr. Tavakoli Meeting 

The pelvic bone sclerosis (scarring) is unchanged since the last CT scan in November. In other words, I have responded very well to the treatment. Apparently, on some people it has no effect...

Dr. T said my condition fits into the category of "solid tumors with bony involvement." He suggested a course of pamidronate, which is in a class of drugs called bisphosphonates, to strengthen the bones/decrease chance of fracture. Dosage is 60-90 mg every 3-6 weeks for up to *2 years*. Side effects: 5% chance of osteonecrosis of the jaw. (These last two are no doubt what I get for asking that he not hold back!) It is not a cancer treatment - it's for quality of life.

He did not say much more about the drug and what it does. Drugs.com says "Pamidronate is used to treat bone damage caused by certain types of cancer such as breast cancer or bone marrow cancer." I was surprised by the suggestion because...I thought I was done for a while anyway, and I didn't know I was at risk for bone fractures. He said we could talk about it more after the bone scan.

He said not to worry about gall bladder 'wall calcification' that was listed on the last PET scan report, unless there is pain.

There has only been *one* study of vaginal cancer, and it was only 20 people (not statistically valid I think.) In that study, there was a 50% chance of people with advanced stage cancer living more than 5 years. Women with advanced breast cancer have even worse odds, based on better statistics, only one third live more than 5 years. (On second thought I think it's probably better not to have these numbers!) As Dr. Block says, these kinds of statistics are not relevant to individuals.  In any case as I'm sure I have said before, there is no survival data for vaginal adenocarcinoma.

Six months from now (Sept/Oct) I should know if this is an aggressive cancer; the PET scan will also be a major milestone.

Photo by Paris Cullen

More about the reference to Stage IV patients as 'treatable' rather than 'cureable'...though I may have already explained this elsewhere. This means they treat it but don't expect it to go away. Best case is that it will be dormant for a long time. The usual cycle with cancer is to alternate between dormant periods, and periods of treatment.

Is local metastases better than distant? Yes, but likelihood of it turning into distant mets is very very high. Is cancer in the bone more life threatening? No, best to look at it all as one cancer. Is the best way to evaluate my primary tumor with a physical exam? Yes. I will make an appointment with Dr. Littel. He also suggested I discuss my concerns about planning my life and so on, with a social worker.

Dr T said he would follow up about the lung nodules with the radiologist who wrote the CT scan report. Also ask Dr Littel to check my gall bladder when he gives me an exam. (I'm going to wait until I heal a bit more until I get an exam; last one, mid-radiation, was amazingly painful.)

By the way, PET scans are evaluated in terms of SUVs - will I ever get away from those letters? (In this case they stand for "standardized uptake value.")

I felt good after this meeting. It seemed like it was the first time I had gotten any info about my response to treatment, and about the future. Before then it had been all about "I don't know. Let's see what happens."

If the PET scan in May/June is clear, I'm good to go. I will get a CT scan every three months for say a year, then every 6 months. If the scan is not clear, chemotherapy every three weeks for 18 weeks.

An entire skeleton scan, which didn't really touch
my nose. Kathy and Tong were in the room. 

Photo Tong Ginn

Bone Scan

A visit to Nuclear Medicine department...an injection of a radioactive tracer...a trip to Walgreen's and a wifi cafe so Kathy could write her blog post. Then back to the hospital to lie down very still and watch a sort of square white plate with a crosshair in the middle of it move very slowly from my face to my feet. Having to lie still on a scanning table is, generally speaking, rather relaxing.

When I got home there was an email from Tavakoli:

"The bone scan shows the following (essentially involvement of the pelvic bones but no other evidence of widespread disease involvement)[in other words, metastases remains localized to pelvis.]

Thought a repeat of this old gem might be in order

"Labeling abnormalities were noted to involve the left inferior pubic ramus into the ischium, and right of the pubic symphysis, extending into the right inferior ramus. There were degenerative changes [meaning early signs of arthritis] in the hips. The overall labeling pattern was otherwise unremarkable. [The tracer I was injected with is also called a label. I believe it is what shows up in the scan/gives off radiation. ]

"-I would recommend pamidronate infusion every 3 to six weeks as we discussed."

I emailed him back with a few questions. His reply: 

"The changes in the hips are related to arthritis according to the bone scan. The other findings are related to the cancer and are in line with the prior PET scan. Please let me know if you would like to proceed with the pamidronate infusions."

Cancer AND arthritis. Grand. My pelvis is quite the senior citizen.

Well I had 24 hours of thinking I would likely be free of scary drug regimens for at least several months. I thought I'd only need to receive the pamidronate if the cancer in the bone had gotten worse, but alas...
I have a lot of questions about this. I am thinking that unless it is really crucial, or will not hugely effect my quality of life, I don't want to do it. But we'll see. I need more info.

My email to Dr. Tavakoli (We'll talk on the phone hopefully next week.)

I understand that pamidronate is not a cancer drug, but it seems to be administered in the same way as chemotherapy, and it seems some of the side effects are the same (nausea.) I had been thinking I wouldn't be on any more drugs, at least until the PET scan...anyway, here are my questions:

Where does the path lead?

1. No one has said anything about me being at risk for fractures this whole time...so fractures are considered a real danger for me? Or is it unknown so the med would be 'just in case'?  My understanding was that the bone sclerosis had not deeply penetrated into the bone.
2. What are the risks of not doing it - breaking my hip? Likelihood? Can I get a measurement of bone density (like the ones they do for osteoporosis.)
3. Alternatives?
4. What are the common side effects? (A quality of life question. You mentioned jaw osteonecrosis but that seems to be fairly rare.)
5. For how long? (''up to two years" seems like a long time!)
6. Are there advantages/disadvantages to longer or shorter cycles? (3 or 6 week)

Should I get a second opinion?

To Do

Appointments with Susan Chen, Dr Littel, psychic!

Email to update Misha